Improving My Lifestyle with Primary Lymphedema

I was born without any lymphatic vessels or nodes. It’s caused me to develop Lipedema and Dercum’s Disease as well.

@MermaidMom I’m sorry to hear that. I have a similar experience with my swelling too

@RosieRae hi! Thanks for telling me about your experience. I have a machine and use compression stockings but since mine are flat knit the material is rough and makes the back of my legs really itchy. Do you have a similar experience?

@GJ only when I’m on my feet for a while and haven’t had a chance to rest. Sometimes the pain can last for a day or two at worst

Also to add in response to your working concerns, you should qualify for workplace accommodations under ADA. Talk with your doctor.

Hi there! I have primary as well, started noticing it during puberty. Mine is pretty well-managed, but I know that consistently wearing my compression garments as a teen definitely helped! As an adult I’m not as great about getting garments (my “grown up” insurance isn’t as good as my parents’) but I tested out a lymphedema pump and it was awesome! If your insurance will cover one, try one and see if you could benefit. My insurance did not, but my lymph therapist helped me find a used one on eBay.

Staying off of it more does help. I do a manual technique that helps a little and the machine helps with pain. Do you have any pain?

Since you stopped working have you seen your condition improve? Any lifestyle changes that you made (exercise, nutrition etc) that made it improve as well?

When I was still teaching I did use compression and wrapping. My hubs helped me and it was still a pain in the rear so I can understand not being excited about doing it alone.

Tbh I kinda fell off of my routine that my doctor and PT prescribed: using the machine twice a day, compression stockings during the day, and wrapping at night. It’s so exhausting and time consuming. It helps when you have someone help you but whenever I’ve asked people for help in the past they grew annoyed and became aggressive with me so I never ask for help anymore. I have it bilaterally in my lower legs. I haven’t even started my career yet but that is one of the things that worries me; not being able to sit down when I need to

Mine is secondary. The main thing I do is use a compression machine at night. However, I don’t work anymore so don’t have to be on it for long periods. Too much walking and it blows up like crazy. I’m not very good at wearing compression.